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Old 11-06-2013, 10:44 PM
heb1212 heb1212 is offline
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Join Date: Apr 2012
Location: Upstate New York
Posts: 107
10 yr Member
heb1212 heb1212 is offline
Member
 
Join Date: Apr 2012
Location: Upstate New York
Posts: 107
10 yr Member
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Hi, Jan.... Oh, I so feel for you, emotionally and physically. I imagine you're reaching out to another neurologist because you're just desperate for answers and relief. I face each day wondering how I'll ever carry on with this, and then somehow I do. Life completely altered, though. I have the SFN everywhere too, including my mouth and face. Absolutely cruel. I know your story, and it's hard to believe that a rather ordinary illness followed by your vaccination could have spawned all this, but I'm here to tell you that something quite similar happened to me. There are times that I look down at my skin and think how can I not be on fire? Why can't anybody SEE this? It's a lonely experience, too. You look fine and healthy, except if someone looks in your eyes they may see anguish or the look of exhaustion from the never ending pain. Ughh... I've always hated drama and been a steady ship amidst storms; but this one has truly rocked me to the core. The search for answers allows hope, I think, that there will be that moment of Ah-hah by that one doctor who can figure it all out. It's such a mystery, isn't it? How/why did my body betray me? And why can't the best medical doctors figure it out? After all, they're successfully dealing with people a lot sicker than me, right? Then, there's our shared faith in God. Why is He so silent when we are reaching for Him, so desperately, for so long? This most bizarre illness has taken so much; if refuse to allow it to take "the gift." Be strong in the Lord, Jan, and allow His grace to help you through another day. If He guides you to another doctor, I truly hope it gives you an answer that gives you peace.
Quote:
Originally Posted by Liftyourhands7 View Post
Hi everyone...
On Dec. 26th I have an appointment to see a new neurologist, I am hoping he will take a fresh new look at my case, this full body SFN is really severe and now I am having problems with a dry and burning mouth.
Glenn I am particularly interested in your point of view, I have already had tons of blood work done all with negative results, could you possibly point me in a direction of what other possible blood work I should have done, for that matter what other tests I should ask this new neurologist for. I have also been looking into having a body scan done for the simple reason of maybe it can tell me if a tumor might be causing this full body SFN, I see there are places in my community that offer EBT and CT scans as well as MRI scans...do you guys see any value at all in having one of these body scans done? What are the risks? What might be the value of one of these? Of course I appreciate anyone and everyone's thoughts, you guys are a blessing, thanks, Jan

Luke 1:37 For NOTHING is impossible with God!!
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